Thank you, thank you, thank you for sharing all the information about where the money goes. It came in handy recently…to show support to a co-worker, we were going to participate in a walk for cancer…turns out it’s $75 a person and fucking $35 of that goes to ‘shipping promo items’, ie the t-shirt you get for the walk. What the fuck?! So, I said, f-this, forwarded the Palmer Cash link to the them to all buy the Fuck You Cancer shirt so at least we know that money is going to pedicatric cancer. While my co-workers husband is obviously not fighting a type of pediatric cancer, it’s still being a little bitch and he is in the middle of some rough chemo and she loves the idea of saying Fuck You Cancer because it has turned her world upside down. I told her about you and Ronan and all the amazing work you have done. How blunt and raw and spicy you are…We are all now getting the Fuck You Cancer shirt and are happy that money is actually going to research and not shipping. I seriously don’t understand how so many places can do that…but if I hadn’t been reading this blog, I would have never thought twice to check to see where the money goes, so again, thank you for all the posts regarding where the money actually goes. I will keep buying Rockstar Ronan items simply for the fact that you are incredible,he is a little rockstar and I know where the money goes and cannot wait to see your & Woody’s dream realized! If that means buying bracelets every month, running a marathon, whatever, it’s worth it to me because I trust you and I know you are going to kick pediatric cancers ass!!

So, F off companies holding a ‘chairty’ walk or run that doesn’t put MINIMUM half the fees into research.. You should be putting all of it towards research. I’m not doing this for the stupid t-shirt, I have my own, thank you, and it says Fuck you Cancer!

Ugh ACS can suck it, they are the worst. I understand that not 100% of money can go to research costs, especially for bigger organizations which have more overhead. Like most universities my college has an annual ACS run/walk but this year I’ll be sure to email the fundraising committee and everyone involved to share the stats and maybe post some fliers around campus. Really pisses me off how they’re like the #1 organization most Americans think of for cancer research. I used to run for them thinking I was doing a good thing.

I am in Canada and I am sure the Canadian Cancer Society is exactly the same. I shall check this out.

People have to know about this. I was always under the impression that 80 percent of childhood cancers are curable and that it is very rare. I am going to send as much information as I can to a wonderful Journalist at the Toronto Globe and Mail. This has to be in the press.

So much goes into fundraising WTF? Who needs fucking tee-shirts. The pink ribbons are making me sick too.

I saw on a webiste the “cure” rates a few days ago, but can’t find it now. If I remember correctly, up to 50% of childhood cancers are “curable” (and I use that term loosely) and the others are still very resistant to treatment, or something along those lines.

Thanks Stacey, I think the public needs to know about this. One of the teachers at my son’s pres-school little 4 year old developed a brain tumor. Now they got it. Chemo radiation surgery they got it. She will be developmentally delayed and hearing impaired. She will never be the same. This information has to come out by press and also by celebrities ie Taylor Swift etc. Thanks for the info. I am getting on to this.

I am confused as hell about what all the web sites are claiming for actual funding going to research childhood cancer research. The NCI is claiming that almost $180 million is spent on research every year for pediatric cancer, but this is just the amount that is sent out to hospitals, research groups, etc. and does not include the operating costs and other ancillary costs that probably make that figure considerably less. I have seen figures that the amount of dollars that get spent on actual research is around $30 million per year.

WTF is the problem here with transparency? What is the truth and are we getting a snow job from the NCI?

I also found the following on the NCI web site… “The Childhood Cancer Therapeutically Applicable Research to Generate Effective Treatments (TARGET) Initiative was established by the NCI and the Foundation for the National Institutes of Health to identify and validate therapeutic targets in childhood cancers. The first TARGET project focuses on targets for high-risk acute lymphoblastic leukemia and the second TARGET project focuses on neuroblastoma. More information about the TARGET Initiative can be found in the article “Initiative TARGETs Childhood Cancer” at http://www.cancer.gov/NCICancerBulletin/NCI_Cancer_Bulletin_112106 on the Internet.”

I was excited to see that they stated the second project focus would be on neuroblastoma, with Therapeutical Applicable Research looking to be “blockers” for cancer cells sending messages to rapidly reproduce the wrong cells at the wrong time in someone’s life, thus causing the cancer. If you can block that signal, you can stop the growth and be less invasive because it target specific cells in the body.

But then I went searching for the results or status of the “projects” and could find exactly jack and shit (pardon my language to those sensitive to curse words). Why do I get the feeling that they are downplaying pediatric cancer? They go on to say that the number of incidents of contracting childhood cancer have slightly increased, but the survival or long-term remission has gone up dramatically.

I look at it this way… kids are fucking dying and the government isn’t doing enough to prevent it. What more do they need to know than cancer is the fucking number one cause of deaths through disease for children ages 0-19? If the technology is there to go after these “focused treatments”, is $1 billion per year too much to ask from the government to battle the #1 disease for children???

I am just shaking my head in bewilderment over this. The more I look into pediatric cancer and the lack of funding, the more I wonder what is wrong with the world?

What makes me sick are the Super PACs and how much money people are throwing around for this election. Regardless of political affiliation, nearly $2 Billion trying to get people elected is such a f-ing waste!

I like a lot of us don’t have the words.. But I think your the true definition for mommy! You fought your ass off to do what you could and your still fighting , like you said your never going to stop….. Your doing such a great job getting the word out, and I also think there needs to be more for the little angels, no mother needs to go through this!! I had know idea September was childhood cancer month, had no idea gold was the color for childhood cancer, No clue, but because of you and Your battle, your crazy war I now know!!! I seen you in the Katie show, and now know your story. I don’t know you , but I know you. I can’t turn away from you now, I need to do all I can to get the word out! I’m a mommy I have a 6 year old daughter and a 4 year old son. I need to protect my babies,.. There needs to be more research for this ugly fucking disease I HATE CANCER. We need to all spread the word. I need to know what to do. How to help. I can not go back to thinking nothing will happen to my kids,.. I was naive ,.. I feel like I was feeling all your emotions as I read your blog, last night,I’m still in tears . I want to scream NO save him, he needs to beat this!! … But From the bottom of my heart I’m sorry. And I now am looking into how I can help, how to get the word out.!!! And scream out FUCK CANCER!!!!

Different websites have different figures (this one says incidence of childhood cancer is up 21% and another says 29%, some sites say ACS uses $0.01 of every $1 and others say $0.07), but no matter how you cut it, the numbers are shocking.

PS – 9.2 MILLION HITS?! You’re unstoppable! Granted, a solid half million could easily have been from me. I wish this website didn’t have to exist. I wish none of us came to know you and Ronan in this way. But because of you two, 9.2 million people will know the super shitty statistics that NO ONE is aware of. On a side note, gearing up for my first half marathon this weekend….just bought my sparkly gold headband which will be a lovely accent to my purple Rockstar bracelets. Spreading the RoLove in Boston! xoxo

Yeah, that is messed up. We need to stop spending money on “missions to mars” and life on other planets! We need to focus on the people living on THIS planet first! I’m going to have a fundraiser soon, to help kick CANCER ASS! I have lost too many wonderful people to this BITCH.

GREED. It’s all about the money. Pediatric cancer is minuscule compared to adult cancer. I believe it is about 14,000 newly diagnosed cancer in children compared to over 1,300,000 in adults. The development of humane and successful treatments for children isn’t profitable to pharmaceutical companies. Around 2000 the FDA enacted the Pediatric Rule which would force pharmaceutical companies to conduct studies for pediatric cancer. The AAPS, CEI and Consumer Alert took the FDA to the Supreme Court and they ruled the FDA did not have legal authority to try to force them to do pediatric studies. The Supreme Court invalidated the Pediatric Rule. Why would these companies fight so hard against finding new treatments for children? Because they won’t make money off of it.

Children get the hand-me-downs of adult cancer research and treatments but pediatric cancer isn’t the same as adult cancer. And that is why the treatments ravage their little bodies so horribly. As far as I understand it, that is why Super Ty passed away, not from cancer, rather the treatment he received. Radiation Necrosis. I may be wrong, but that is what I understood.

The monster to fight here is greed. Lack of awareness is a huge problem, but IMHO greed is why so many children suffer and die each year. And if they are “cured” the effects of the treatments can rear it’s ugly head in the prime of their life, 20’s and 30’s by causing chronic illness and disabilities.

The battle against pediatric cancer has been waging for a long time, but it is a tremendous help when a celebrity will take on the cause like Taylor Swift did by writing “Ronan”. If everyone with star power would take on a child out there that is either suffering or have passed I think it would speed up the process exponentially.

All that said, I hope Ronan, Super Ty and all the other little ones that have passed away are somewhere being the children they always deserved to be.

Hello Maya, I’ve been reading your website since I heard the song gritten by Taylor Swift for your little baby and I cried so much reading your words and watching his photos. He was a beautiful boy. Anyone can imagine just how much the words “I love you to the moon and back” means to me now. You are an example to be followed, a fighter and an excellent mother. My best wishes to you and your lovely family xxx

Ridiculous! I honestly don’t understand how childhood cancer is not the number one priority of cancer research and care. It’s our children, the future generation and they don’t even stand a fighting chance when they are overlooked and not treat with the fairness and love they deserve. I’ve told Ronan’s story to pretty much any person I can get to listen and just vent about how important this is and don’t understand how nobody seems to care. It seriously just pisses me off to the point I can’t stand it anymore! My daughter just turned 3 and to imagine going through what you did knowing the horrible facts about how little this even mentioned or funded makes me sick! I think what your doing, and what sounds like an amazing team you have working with you are amazing! If anybody in this world can make a change and help fight this unfair fight of childhood cancer it’s you. Ronan has to be the proudest little angel out their to have a mommy who fights so hard for him and all the other children who need a hero!

Maya,
I also recently learned about Ronan from Taylor’s song about him. After I heard it I googled his name to see if I could find out anything about him and I found your blog. I went to the very beginning and I have been reading non stop. In all of my free time (which I don’t have a lot of because I also have three children) I read about Ronan and and I too have fallen in love with him and your family.

As a mother I am ashamed of the lack of education on my part if childhood cancer. It so sad that something as precious as a child’s life does not get the same attention as breast cancer or other various cancers.

I know it isn’t a lot but I posted on my Facebook about Ronan and the website that you can go to buy his tee shirts and bracelets. Even it just a few more people read about him and become more educated and maybe buy a bracelet then that is more people that knew than before. I bought my own FUCK YOU CANCER bracelets and also a Rockstar Ronan tee shirt and cannot wait for them to come! I’m going to fucking rock the shit out of them and I will continue to spread Ronan’s story because no family deserves to lose a child especially to cancer and no beautiful baby deserves to go through what Ronan did. I’m praying for you and your family to continue to find peace and that the Ronan Thompson foundation beats the shit out of cancer!! Xoxoxoxox

It’s stupid that they don’t spend a lot of money on research for childhood cancer. Um, hello? Don’t you know that these children are the future? How could something possibly be more important than keeping children alive? Childhood cancer research deserves more funding and awareness than it gets. If we all join forces and spread the word about childhood cancer – you go talk to your friends, talk to my friends, talk to me (Taylor Swift) – maybe we can make a difference. I will go and cry and scream in front of Barack Obama until he comes to some sense. And I can do that, because I am only 12 and still know how to throw a good tantrum :D. Hey, Maya, guess what? Gold is my new favourite colour! I swear to God I will find a way to change the world and make people aware of childhood cancer. I will paint myself gold and run around the street yelling, “Hey, Australia, guess what? Childhood cancer is real and you should get off your butt and donate! Get behind the pictures of bald kids with brave smiles and do something! We CAN change the world!” Don’t you worry, Maya, I hear your cries and I feel your pain… something needs to be done!

I have lost myFather to cancer, my mother to cancer and my little sister to cancer….all of them different….all of them fought. My sister the longest she fought for 10 years! The Drs. and nurses said she taught them all about fighting. When they told her she wasn’t going to live to see old age….she looked at them and said Fuck U! She fought. She didn’t give up…her body did. My Mother fought for 2 long hard years. And my dad well, they miss somethings and we lost him 4 months to the very day we were told. We have all done car washes, relay’s, walks, anything! But here is where I learned all of my families hard work, my children thinking they were doing wonders to help and WTF……..I have a child with Autism and it is the same with the donations to that….a small percentage goes to fight. Why what do these companies need so badly. Lives are worth so much more than they give…….why …..anyone have an answer for me? I am sooo angry right now…..

Hi Maya,
You did not even need to melt my heart on the Katie Couric show…you already had with Ronan’s Blog. The love and connection you have for him comes across on your blog, and it came across so painfully and beautiful on the show. Not trying to bring you down…I could literally feel your pain and Woody trying to touch/put his arm around you on the screen of the TV. Then, Katie was in clearly..tears. You have done it…it HAS to rear it’s ugly head…childhood cancer is TAKING, MURDERING, SUFFOCATING, HOLDING-HOSTAGE, TORTURING, SCARING—(and not in a good and fun HALLOWEEN way)…our babies and future Presidents, Doctors, Teachers, Lawyers, Therapists, Stay-at home-Mommies. I wrote to you back at the first of October, and I was all fired up that I had my brother die from that word that shall not be named (Harry Potter ref.) Neuro.:(, Very rare occourence at 29. So be it. ) My pain, of loosing him, can not compare to loosing (am i spelling that right? loos-lose? damn, and I pride myself on my 6th grade spelling bee win) to loosing your baby 3 yr old precious boy, what the FUCK? I have a boy…he just turned 13, the moment i saw him, he was mine, a connection like no other. But I have a girl, too 14…your little girl will absolutely give all of you a desire to love and protect her. Which is what your Ronan would do, and he is doing it now. He is relying on his big brothers to look out for her on earth while he does all of his work behind the scenes. I want to move mountains with you in Dallas, I feel sad for you when you are sad. I am happy for you when you have those sweet glimpses of happy (you have to know that when you get glimpses of happy, that is your RO-baby)…you have to continue to give yourself time, and care and love. There is no mile-marker to finish a race, when you are grieving. Sometimes, that marker will keep moving out of your reach, but you keep running the race. You just keep going, and along the way during that race, you get Gatoraide thrown at you (metaphor), you get love thrown at you. I am throwing love at you and your family. I am tossing it in the air as if it was glitter…going to your precious family. Know your blog is being heard, and it means a lot to so many, and we are all fighting this Neuro (that word that shall not be named), fight awareness, and awakening for everyone, with you.

I love GOLD, and I LOVE SEPTEMBER…all of us PTA mom’s ….take it up a level. At every school, if we do “pink out” month….then we do “glitter gold” in Sept. you could go crazy with the gltter and sparkles. there could be fireworks (sparklers) to kick it off, etc

as dr seuss once said, i like nonsense, it wakes up the brain cells. going through all this information is so dissappointing and frusterating! im a 24 year old girl and i see how messed up all of this is! i found this blog last week when my cousins wife posted a status on facebook about a boy who lost his battle to childhood cancer and after reading that mother’s blog, and this blog i have become so mad and irritated! i even find myself yelling at my friends when they bother me with trivial bullshit like i got soooo drunk last night the guy i like wont text me back, umm there are more things to worry about than that. i found myself getting into a fight with my mom over this because shes so misinformed, and lately i have been spreading this story in particular, because it just resonates with me. i made my mom dvr the katie couric show the other day and told her to watch and she then told her friends . later that night i went on e news , which i do daily, and i passed an article about leanne rimes being on the katie couric show talking about her rehab, this is when i became ANGRY. who cares about her and her rehab, when there was a much more important story being featured about a goregous little boy who died?! the priorities of this society really disappoint me.

Thank you so much for posting this. I was just wondering the other day as I recieved ANOTHER pack of return address labels from St Jude’s how they can afford to keep sending these to all of their “donators”. Don’t get me wrong I like the gifts I receive from them but I only donated $10 years ago and let’s just say with all of the labels, calendars and note pads I’ve gotten back from them, I haven’t had to purchase any in years!! I wish I could send them all back and tell them to give the amt they spent on crap to me to go to something more useful like a FUCKING CURE so no one else has to go through what you, your family and that Beautiful Amazing Blue Eyed little boy Ronan have gone through. Its very offending now!! Fuck! I may send them all back bc i certianly cant use them now knowing what a waste it is and I will include a picture of Ronan and tell them keep their shit! i just want Ronan back with his mommy So stop the printing press and FUND RESEARCh FOR THESE BABIES! I want to tell St Jude and all of the other idiot charities wasting money thanks for the goodies but I’d prefer not to ever stumble upon the greatest love story I’ve ever read and cry my eyes out and become heart broken daily reading Maya’s sweet words because a CURE has been found!!!!! I shared this link on my FB page. Hope you don’t mind! Keep up the good work. Your amazing even though I wish it wasn’t bc of this.